So, a few things I left out of the last post.
I want to emphasize that going to a feeding tube was the
We, along with her doctors, tried everything first.
In order for a doctor (or at least the ones we met with) to even suggest putting a feeding tube in,
things have to have gotten to the point where it was
life or death.
Without the feeding tube Lily would have died.
Without a doubt.
I also want to point out that
IN NO WAY was the feeding tube
"the lazy way out"
I have heard many times
it been said that tube feeding is for
That IS NOT THE CASE!
There is nothing easy about
Except for being able to force a burp anytime at all :)
So on a different note...
when we first got the NG tube
They put her on an elemental formula
Its super expensive
Like 40 bucks a can!
but because she had a feeding tube
but because she had a feeding tube
our insurance covers it. :)
They also put us on a continuous night feed.
this means for 10 hours every night she
is hooked up to her pump
and is fed.
It goes super slow
(about 2 ounces an hour)
but since she is sleeping
most of it stayed down and so as a result
she started gaining weight and
started progressing again!
So, the first time I put an NG tube in her
I cried and cried.
I felt so mean, and it looked scary to me.
No one likes having a
BIG YELLOW TUBE
taped to their baby's face
"something was wrong".
But, Lily was very good at pulling it out
so I became very good at putting it back in.
Plus it literally saved her life
and I LOVE it for that!
I definitely have a love/hate relationship with her feeding tubes.
I was surprised at the amount of supplies I had to have with me at all times though...
An Ng tube, sterile water,8ml med syringe, and a 60cc "bolus syringe"
A stethoscope to "check placement" and make sure the tube is in her
stomach and NOT her lungs...
ky jelly for the tip of the ng tube to make it go down her nose easier,
Hypafix! My most favorite med tape in the world!!
plus surgical scissors to cut it with,
also paper tape to tape the end of the tube closed.
we later switched to waterproof HY tape but I don't have a pic of that...
Duoderm! We cut a thick piece of duoderm and put it on her cheek first to protect it
from taking tapes on and off all the time
One piece of duoderm usually lasted about 5-6 days
even with getting wet!
the smaller piece is tegaderm.
its clear and pliable and super sticky but its one of the things she isn't allergic to and it
came in handy when I was out of hypafix!
It is also used on her IV port.
This is her Iv pole. I decorated it to match the "girlishness" of her room
You can see a close up of her feeding pump and bag here
and we would hang her apnea monitor on it while she was sleeping as well!
As many "tubie mommies" say
taping an ng tube is an art more than it is a science
It takes lots of trial and error,
here's our taping progression
Day 2 of the ng tube, The hospital did this one and I thought it was a bit overkill...
Next I went to the waterproof hy tape, it was super gentle on the skin but it
looked weird to me because of the color
and it came of WAY to easily
Next, came the tegaderm trials,
It stayed on MUCH better than the hy tape
but it stayed on too well
and took skin with it when it was time to take it off :(
yeah so at first we taped the WHOLE tube down to her cheek
it helped train her to leave it alone and not pull it out...
Which she still did on an almost daily basis...
You can see the "guilty" look in her eyes her cause I caught her
pulling it out...
we got to the point where we just needed two small squares
one right next to her nose, and one just next to her ear
I felt like it "cleared her face up" a bit
This was her last day with an ng tube
So I took a
diaper pic so I could have a pic of her perfectly un-scarred skin.
She was going to have surgery in the morning
I made her a tubie bear.
she LOVES it still!
To Be Continued...
Next up the reasons we HAD to go to a g tube, and the surgery...